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Is It Celiac Disease?

Luv-my-kidz

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Luv-my-kidz Newbie
Luv-my-kidz
Posted

I'm really not sure what's going on? My daughter's been having stomach problems for over a year now. She's 6 years old. We've been going to the dr's for 8 months now and I'm still confused. She's had ultra sound, ex ray, scope, blood work done. The biopsy showed Celiac Disease 3 months ago so we saw a dietitian and she told us what to do as far as cleaning out the house. She also told us it could take some time to feel better. We have been really strict with the diet. A couple of weeks ago we finally were able to see her Dr. Again and told him she is still having stomach pains so he did a genetic blood test but we don't have the results yet. He said if it shows up negative then she doesn't have it. He said she just has a nervous stomach. If it was Celiac Disease she would have been better in a month.

I guess I'm confused because in the beginning they tell us this is defiantly what she has, makes us get rid of everything in the house and now it's not. Is the genetic test a definite answer that she doesn't have it if it comes out negative? What about the biopsy saying positive? The dr. Said that he doesn't know what else to do and we can get a second opinion.

Really frustrated right now and just want her to feel better.

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kareng Grand Master
kareng
Posted

If its is a positive blood test and a positive biopsy - it is Celiac.  If it is just a biopsy - maybe there are other issues the GI should be looking for?  

 

Open Original Shared Link

 

"Could you have positive blood work and a positive biopsy and not have celiac disease?

Positive blood work (meaning tTG or EMA) and a biopsy consistent with celiac disease are rarely due to other causes. However, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar."

 

Open Original Shared Link

 

"What else can cause villus atrophy in the small intestine other than celiac disease?

There are many causes for villus atrophy, the most common being immune deficiencies, food allergies and Giardia infections. In addition, Crohn’s disease is known to be often associated with low positive tTG and the changes in the duodenal biopsies can indeed be similar......" see link for full list

 

It can take a long time to feel better. 3 months gluten free isn't really enough to learn how to be gluten free - there is a bit of a learning curve and time to get gluten out of the house, etc.  

 

It could be other foods causing issues, too.  Have you tried eliminating dairy/lactose?  Is she getting gluten away from home?  

Luv-my-kidz Newbie
Luv-my-kidz
Posted
  • Author

We have talked to people that have had Celiac Disease and they told us it took them a lot longer too. I told the Dr. That and he (said no it should only take 1 month). I really don't care for her Dr. Anyways. I guess that's why I'm asking on here because I know everyone here has gone through it.

As far as getting gluten anywhere else I really don't think so because I'm the only one feeding her. We haven't been out to eat. We did try getting off dairy/lactose for three weeks and we didn't see a difference. She was also tested for a milk allergy. Maybe it's something else. I really hope we can find the right Dr. to help her.

Thanks for posting!!!

Jays911 Contributor
Jays911
Posted

Is the Doctor an endriconologist? If not, find a good one.

kareng Grand Master
kareng
Posted

We have talked to people that have had Celiac Disease and they told us it took them a lot longer too. I told the Dr. That and he (said no it should only take 1 month). I really don't care for her Dr. Anyways. I guess that's why I'm asking on here because I know everyone here has gone through it.

As far as getting gluten anywhere else I really don't think so because I'm the only one feeding her. We haven't been out to eat. We did try getting off dairy/lactose for three weeks and we didn't see a difference. She was also tested for a milk allergy. Maybe it's something else. I really hope we can find the right Dr. to help her.

Thanks for posting!!!

 

 

Ok.. but... did she have a positive blood test AND a positive biopsy?  Because, if the blood test was not positive or maybe just barely positive, a GI should be looking for other things - like the links I posted.  Those links are from actual Celiac experts at an actual hospital - so most doctors will take a look at that info.

kareng Grand Master
kareng
Posted

Is the Doctor an endriconologist? If not, find a good one.

 

 

While it might be good to get her thyroid tested - Celiac disease isn't usually followed by an endocrinoligist - usually a GI and a primary care doc.

nvsmom Community Regular
nvsmom
Posted

Genetic tests aren't really useful, in my opinion.  All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease.  Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac disease, and not if you have it.

 

I agree with Kareng, blood tests should be done if there is any chance that the biopsy results were not positive because of celiac disease.... but it usually is celiac disease.

 

That doctor sounds like a dolt.  One month?  Hah!  We wish.  My autoantibodies were not even back to normal at 9 months so I KNOW my intestines were still being attacked.

 

I would consider going dairy free again.  Half of all celiacs can't handle dairy when they are diagnosed.  Over 2 years gluten-free, I can have small amounts of lactose, but I pay for it for a few days.

 

Corn and soy are problem foods for some celiacs.  Keeping a food and symptom journal may help you pinpoint a problem.  Just keep in mind that food sensitivity symptoms appear minutes to days after the food is eaten.

 

Thyroid check is a good idea too.  It can slow and mess with digestion too.  Having that treated, if needed, can really help.  TSH, freeT4, freeT3, and TPO Ab are the best tests.  Avoid T4, T3, total T4, and total T3 as they won't tell you as much.

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Jays911 Contributor
Jays911
Posted

All I know is that two GPs and two gastroenterologists failed to diagnose my celiac over a 10 year period, while a great endriconologist found it on the first visit. Yes, I have had longstanding thyroid issues, but, in retrospect, that should have prompted a more thorough look at other autoimmune issues. But they didn't look.

Luv-my-kidz Newbie
Luv-my-kidz
Posted
  • Author

Ok.. but... did she have a positive blood test AND a positive biopsy?  Because, if the blood test was not positive or maybe just barely positive, a GI should be looking for other things - like the links I posted.  Those links are from actual Celiac experts at an actual hospital - so most doctors will take a look at that info.

The first blood test back she took was negative. Six months later she did the biopsy and they said she had it from that. I'll have to look into the other things you sent. I don't have the genetic blood test back either. So maybe that will tell me more.

Thanks!

Luv-my-kidz Newbie
Luv-my-kidz
Posted
  • Author

All I know is that two GPs and two gastroenterologists failed to diagnose my celiac over a 10 year period, while a great endriconologist found it on the first visit. Yes, I have had longstanding thyroid issues, but, in retrospect, that should have prompted a more thorough look at other autoimmune issues. But they didn't look.

I never thought about an endocrinologist. Thanks for letting me know!!

Luv-my-kidz Newbie
Luv-my-kidz
Posted
  • Author

Genetic tests aren't really useful, in my opinion.  All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease.  Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac disease, and not if you have it.

 

I agree with Kareng, blood tests should be done if there is any chance that the biopsy results were not positive because of celiac disease.... but it usually is celiac disease.

 

That doctor sounds like a dolt.  One month?  Hah!  We wish.  My autoantibodies were not even back to normal at 9 months so I KNOW my intestines were still being attacked.

 

I would consider going dairy free again.  Half of all celiacs can't handle dairy when they are diagnosed.  Over 2 years gluten-free, I can have small amounts of lactose, but I pay for it for a few days.

 

Corn and soy are problem foods for some celiacs.  Keeping a food and symptom journal may help you pinpoint a problem.  Just keep in mind that food sensitivity symptoms appear minutes to days after the food is eaten.

 

Thyroid check is a good idea too.  It can slow and mess with digestion too.  Having that treated, if needed, can really help.  TSH, freeT4, freeT3, and TPO Ab are the best tests.  Avoid T4, T3, total T4, and total T3 as they won't tell you as much.

I didn't understand what the genetic test showed. Thanks for explaining

I never understood what the genetic test showed. Thanks for explaining! We've never do

Genetic tests aren't really useful, in my opinion.  All they do is show whether you are one of the 30% of the people world wide who have the DQ2 or DQ8 genes; it doesn't tell you if you have celiac disease.  Yes, 97% of celiacs do have the DQ2 or DQ8 genes, but 3% do not. A positive genetic test just tells you if you are at greater risk of getting celiac disease, and not if you have it.

 

I agree with Kareng, blood tests should be done if there is any chance that the biopsy results were not positive because of celiac disease.... but it usually is celiac disease.

 

That doctor sounds like a dolt.  One month?  Hah!  We wish.  My autoantibodies were not even back to normal at 9 months so I KNOW my intestines were still being attacked.

 

I would consider going dairy free again.  Half of all celiacs can't handle dairy when they are diagnosed.  Over 2 years gluten-free, I can have small amounts of lactose, but I pay for it for a few days.

 

Corn and soy are problem foods for some celiacs.  Keeping a food and symptom journal may help you pinpoint a problem.  Just keep in mind that food sensitivity symptoms appear minutes to days after the food is eaten.

 

Thyroid check is a good idea too.  It can slow and mess with digestion too.  Having that treated, if needed, can really help.  TSH, freeT4, freeT3, and TPO Ab are the best tests.  Avoid T4, T3, total T4, and total T3 as they won't tell you as much.

I agree that 1 month is too soon to tell. I never understood what the genetic test showed. Thanks for explaining!! We've never done a food journal either. Hopefully that will help when she's having bad days to tell what's going on. We haven't done thyroid testing either. Thanks!!

Luv-my-kidz Newbie
Luv-my-kidz
Posted
  • Author

While it might be good to get her thyroid tested - Celiac disease isn't usually followed by an endocrinoligist - usually a GI and a primary care doc.

Thanks! I never thought about that!!

MomBTired Newbie
MomBTired
Posted

Time for a new doctor.

bartfull Rising Star
bartfull
Posted

Are you sure she is completely gluten-free? Does she have a dedicated toaster? Do you still use the old wooden spoons? How about butter and mayo and the like? If a knife that touched regular bread dips into them they are contaminated.

 

Go to the coping section and read the Newbie 101 thread for more places gluten can hide.

Luv-my-kidz Newbie
Luv-my-kidz
Posted
  • Author

Are you sure she is completely gluten-free? Does she have a dedicated toaster? Do you still use the old wooden spoons? How about butter and mayo and the like? If a knife that touched regular bread dips into them they are contaminated.

 

Go to the coping section and read the Newbie 101 thread for more places gluten can hide.

I will check out the newbie thread. I bought a new toaster, new Tupperware, cutting board, pans, new wooden spoons. I only cook gluten free in the house now. I have new jars of everything. So I think I'm doing ok but I will check. Thanks for asking. I might have forgot something.

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